My thoughts on self diagnosed autistics

I am always hugely supportive of self-diagnosed autistic people.

Research is obviously needed; to self diagnose you need to be educated. The #actuallyautistic hashtag on twitter is a good starting place. The AQ test, RDOS test, & family history (if available) can also help point you in the right direction.

Autism is a spectrum, it’s not experienced the same by everybody…the sensory issues, stimming, social difficulties, shutdowns/meltdowns are all unique experiences.

For a lot of adults who were missed as children (particularly AFABs – assigned female at birth), self diagnosis can be the only option.

This can be due to:

  • money
  • misconceptions on autism perpetrated by healthcare professionals (eg “you can’t be autistic you just made eye contact!”)
  • medical trauma/C-PTSD
  • disability (inability to travel to specialists, inability to wait several years to see specialists etc)
  • family history/family members at appts impossible (often these are a requirement at assessments, & professionals refuse to work around)
  • or their country not offering adult diagnostic services.

This is the case of many places in the UK. Only certain areas have the service to diagnose autism in adults, & it involves much fighting to be referred by incompetent drs, & then years of waiting.

Technically, I count as self diagnosed. The NHS doesn’t have a way to diagnose me in my county (& even if they did I can’t travel far due to physical disability); all I have is my NHS autism passport – no formal diagnosis on paper.

The vast majority of self diagnosed autistics have struggled THEIR WHOLE LIVES. Since childhood knowing they were different, but never having an explanation. Treated horribly by teachers, students, family moments; made to feel like a failure & an outsider. Then as an adult they discover they are autistic, & there’s a whole community out there who truly understand them!! Finally they’re with others who understand, support them, encourage them to be themselves & stim as they need!

And suddenly their whole life has changed.

It isn’t my fault my autism was missed in childhood. It isn’t my fault AFABs are hugely undiagnosed & dismissed. It isn’t my fault the NHS doesn’t deem it important to diagnose adults correctly.

Nobody has a right to gatekeep or tell others how their health is. We, as autistic peeps, should be supporting each other.

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IMSK appt

iMSK appt was….mainly good.

Didn’t get the MRI referral, which is why the GP fricking referred me there & what I need urgently, so that is absolutely NOT good. But she said she was too worried she’d order the wrong ones, even when I told her what the CCI specialist in the US had asked for.

So she’s having to refer me to a spinal specialist to get the MRIs they think I need, which has a really long waiting list & involves a lot of traveling 🙄
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Consultant also hadn’t been told I was autistic/the adjustments I needed, which Lyle had phoned about last week & was told they’d pass them along.

The biggest issue with this was it meant I didn’t get detailed explanations of what she was going to be doing in tests, or asking for consent several times (as when I’m making I’ll just say yes automatically). So one test involved stroking all along my face, which I wasn’t told about & which pushed me WAY over threshold. It caused hours of struggle afterwards 🙄 She also misgendered me, despite my cap covered in pronoun pins. This also made me autie struggle a lot more, & feel lost/overwhelmed.
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But the good:

  • we’re getting referral to a spine specialist so they can decide which MRIs I need (this will be a wait of months 🙄)
  • she agreed that I almost definitely have hEDS & has said in our next appt we’ll go through criteria.
  • she’s booked me an appt to see her again in 6 weeks
  • she’s gonna talk to the rheumatologist, regarding EDS diagnosis (see below as to why)
  • she’s also getting in touch with pain management & has suggested amitriptyline for me

Apparently in this area there’s no way to diagnose EDS – they have to apply for an out of area grant & send me to a specialist in Sheffield. The grant is exceedingly hard to get, so yet another diagnosis might be unobtainable due to lack of services in my area. Welcome to healthcare in the UK 🙄

iMSK consultant also pulled up my recent bloodwork, & said my inflammation markers were high. I wasn’t told this by my GP surgery, I just got told my iron was low. So she’s ordered a repeat bloodtest before I next see her 🙂

The last 1/4 of the appt was lost to me as seizures were triggered. She asked me to stand up (turned out so she could do Romberg test); I told her I’d have a seizure, she got iffy, but I pushed for it as I wanted her to do all the tests she needed. Unfortunately after the seizure due to all the bright lights I crashed & could barely formulate thoughts due to fog…so I was pretty ‘blank’ for the rest of the appt 🙃
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Overall…kind of a positive appt.

Didn’t get what I need most, but we got some positives.

It did trigger a huge shutdown/meltdown episode, which left me feeling unable to handle going through the city/getting a train home.

As a result Lyle ended up pushing me 8 miles along the canal (constantly reassuring me he loves hiking & the weather was gorgeous 😂) so I’d be able to recover/wouldn’t have to deal with loud noises/lights/crowds 😭

Hugely grateful to him, as I wouldn’t have been okay otherwise. As it was I could rest, recover, & talk through my confusion 💙

The day before iMSK…

Well I didn’t feel well enough to go out today alongside other things I need to do before the iMSK appt (go over notes, type up/print my last notes, shower). So instead we decided to stay in, get everything ready, & dye our hair 🙂
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Even though I don’t feel great physically today, I definitely feel better than I have the least several days!

My joint pain is much better, overall pain has gone down a bit, seizures aren’t great but aren’t abysmal, & my heart rate is ‘good’ for me (50bpm increase). With as much of a rest day as possible today, I should be ready for iMSK tomorrow!

Also as it’s scheduled rain we won’t be taking Zeke, which means we’ll be able to go the inaccessible fast route to the train station rather than the 60min way…hey council, ya gonna sort the scaffolding & stop breaking the law anytime soon? 🙄

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Blue boy 💙

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Uuugh, disaster walkwheel. Not AT ALL what I needed the day before a big medical appt 🙄

Obviously both my autism & medical trauma means any appts are hugely stressful for me, but this one is especially so as:

– I’m expecting to be met with cluelessness
– there’s a lot of complex information to get across (explanations about ME, what CCI is, how they crossover, missed hEDS)
– & this is a service I have no experience with.
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For an autie, this is A LOT to handle.

I was hoping this walk would be a nice distraction, but nah, it just triggered a meltdown. The final trigger is always something so ridiculous, as by then I’m way beyond threshold (“the straw that broke the camel’s back”).

This is known as “trigger stacking” in the dog training world. On this walk the final trigger was Lyle attaching my lead belt wrong when Bandit was on my lap 🙃
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So fricking unlucky. There was a 20% chance of rain at 11am, we waited in all day until the entire rest of the day was below 5%, then went out. It hadn’t rained ALL DAY. Until we were out 😑

Bandit alerted to my meltdown, which was good…but what a shite walk.

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Still haven’t sorted the last few of my notes for tomorrow.

Lyle laminated my DIY communication book today. We spoke about the appt as I was stressing, especially about how to answer that BS first question of “so why are you here today?” 🙄 As an autie that blows my mind; I really struggle with what to say, don’t know how to word it/explain it. Tomorrow’s particularly difficult as there really is SO MUCH STUFF.

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This is my DIY communication book for when I’m nonverbal.

I have an app on my phone, but I prefer a physical form as:

  • it’s easier for me to use
  • doesn’t cause issues with photophobia
  • is silent (my app verbalises the phrases & I often forget to silence my phone)
  • & my hand tremors can’t communicate something entirely different than what I wanted 😂

I also like that I can tie in my pronouns, overall health, & how medical professionals should treat me, too!

9th August 2019

I’m falling apart, I swear idk if my joints have ever been this bad.

Wrists = agony, shoulders = agony, one hip is being a twat & my fingers are awful too. All my joints ache & pain is immense.

Can’t cope with my phone or Xbox controller, can’t eat with cutlery, can’t hold a drink. Ugh. Trying wrist bands to lower pain.

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Went on a small dog walk today but had an autistic meltdown, Lyle realised it was ongoing fallout from him being ill last night…I always struggle with him being poorly & knowing what I should be doing. That sucked, although Bandit was awesome…peep him alerting post meltdown.

Got a letter asking me to answer a survey on the ambulance service that helped us avoid A&E last month…the only thing I could positively rate the NHS on currently 😂 May be quiet today as Lyle has had to type this for me!

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Check out this storm!! 😱

Yesterday’s fun

Morning

All symptoms terrible today ow and why. Wet room people came round couldn’t cancel again, they were lovely will post about it later gonna go try survive this current crash.

Evening

Oof today has been a battle, I have been SO unwell 😂 Finally started to feel human waking up from my third nap at 6.30pm 😂 TW for food on next slides!
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So the company the council has paid to do the wet room came this morning. The guy was so lovely!

He gave us colour charts to pick, told us which ones most people were going for, then went up to measure stuff. The paper chart are the walls, & the squares of colours were the flooring choices!

He asked if we were happy with the plan we’d got in the post, which we were, & explained they couldn’t do the bathroom door opening inwards as the bathroom is too small and it’d hit the toilet! We picked our colours, which was stressful but badass 😂
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The company does a lot of specialist bathrooms for disabled people, so we’re in very good hands! They’re coming to do it at the end of this month (aaaagh! 😍) & it will take a week 😱😂 It’ll be hellishly stressful for me, but the company seems awesome & it will totally be worth it!

Some of the specialty stuff they do for nursing homes sounded incredible…like a bath with a chair that raises the person, lifts & holds the person over the full bath, then the bath LIFTS UP TO GO AROUND THE PERSON so the carer doesn’t have to bend over the tub!
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Gonna try for a little dog walk now. I was excited about taking Zeke the long way into town today, but I daredn’t push my body too far with how crap I’ve felt 😂

After walk

Teeny walkwheel done. Kinda fun, kinda awful. Bandit alerted to a seizure & was incredible, but my right wrist is knackered 😥

Here he is being a little star though!

Quick bit of seizure awareness –

Complex partial seizures are not what you typically see being portrayed in the media, although they’re actually the most common type of seizure. Did you know there are over 40 types of seizures?!

In CP seizures, the person is totally unaware of their actions or surroundings, & has no memory of the event afterwards. During the seizure they may continue an activity they were doing beforehand, such as walking or eating. They may fidget, pluck at clothing, laugh, talk nonsense etc. Afterwards there is usually a postictal phase, where the person is confused, disoriented, & may have trouble speaking.

My right shoulder has been extremely loose today, constantly slipping in & out with me eventually saying to Lyle there’s no point making sure it goes back in 😂 Dunno if it’s related to that or not but my wrist started KILLING on this walk, with no trigger…it hurts so bad, feels similar to a broken bone but definitely isn’t. Super ‘ugh’ though.

Preparing for iMSK & fighting the council

Oookay. Great. Thanks printer 😂

Lyle’s trying to put a weird old ink cartridge in, because ink cartridges are hella expensive 😂

Today I spent about a hour typing up the notes I’d already written out for my iMSK appt. My exhaustion & #brainfog are off the charts Rosario, making this activity HELL. I kept forgetting the damn words I had just read to type up 😑

Lyle offered to do it for me, but he was doing stuff with the council & my autism passport, so I was all snappish like “NO I CAN DO IT!!!” 😂 It was awful though, I felt so poorly afterwards.

Lyle phoned up the iMSK clinic & explained I’m autistic & that an overview of what the appt would entail would be helpful. They were great, I feel slightly better now (that’s good for me 😂).

  • The appt is 45mins long
  • They’ll discuss issues & symptoms
  • There’ll come up with a plan of how to help and what referrals I need.

Yay, sounds perfect!

We also got a response from the council, after they’ve had inaccessible scaffolding up for 8 months. We’ve been reporting it & fighting for ramps for 2 months, after doing down the step curbs broke my main wheelchair.

Well, THEY’RE FINALLY PUTTING RAMPS DOWN!! I’LL BE ABLE TO ACCESS SHOPS & TRANSPORT SOON 😭

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And finally, today is *battery day* for Zeke 😃

Idk when they’re gonna arrive, so I’m impatiently waiting and hoping it’s soon!

Big update & iMSK soon!!

(21st July 2019)

A truly awesome person got in touch & said they would PAY FOR THE SECOND-HAND POWER CHAIR FOR US 😭

So…we have the chair, it’s ours, my parent’s are bringing it up hopefully next weekend (yes it means I have to see them, but IT WILL BE WORTH IT!).

I was crying & stimming for about an hour, I kinda broke & am super exhausted now…the best type of exhausted 😂 I am so grateful, thank you 💙
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I am continuously blown away by people who have never met me…but who go to such measures to help when I need it. It’s hard to put into words how much this means, to me & Lyle. One person bought me an electric wheelchair; another has sent us money for food twice when we couldn’t afford any ourselves. I have instagram friends who check up on me; who are there in my darkest moments; who donate items I need but can’t access; who rack their brains constantly to help solve problems…& I am SO GRATEFUL FOR YOU ALL. I don’t know what I have done to deserve this, I definitely don’t deserve this, but thank you! 💙

(24th July 2019)

I cried so much last night. New symptoms + bipolar depressive episode is…really shit 😂

It’s thinking about Lyle left on his own that always completely breaks me. That’s the saddest thing & so obviously depression latches onto that.

This depressive episode was triggered by dealing with the NHS. Medical appts are my number 1 bipolar trigger 🙃

I’m hoping it’s a short one, I’ve had 2 weeks of depression so far & it can last months…it needs to bugger off asap. Only 2 days until my power chair is here!!

(26th July 2019)

ITS AMAZING!!!!

And it’s even nifty enough for me to manage it in our small living room 😃 Enjoy me crashing in the second video…pretty sure Lyle cursed me 😂

I LOVE IT!! The front castors sometimes struggle to do sharp/immediate turns depending on their position, but it’s not a big issue even on carpet…I CAN’T WAIT TO TAKE IT OUTSIDE WHEN THE RAIN FINALLY STOPS!! Thank you so much 😃

(30th July 2019)

I’m hugely struggling and idk how much longer I can drag myself through this bs.

NHS has fucked us about in two different ways today, & UC has called my partner in & we don’t know why. To say I’m depressed/stressed would be a huge understatement.
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Dr W supposed to ring between 9.30 & 10…when Lyle phoned at 10.30 they said he’s “running a bit late” but would call before 12. When Lyle phoned at 11.45 & said he wouldn’t be able to answer the call until after 2pm now, the receptionist said it was unlikely dr W would be able to ring in the afternoon because we were scheduled a morning appt…WHAT THE FUCK IS GOING ON HERE 😭
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The iMSK referral has fucked up & I’m scared they’re not going to accept me, which would mean waiting until March 2020 for the neurologist to refer me for my MRIs I urgently need…

I wasn’t even made aware they needed to accept me! But apparently normally the GP hears back from the iMSK clinic within 48hrs, then a week later the patient picks up the forms (which is what we’ve been ringing for).

But the iMSK hasn’t screened/accepted my referral & it’s been over a week – the GP is “chasing it up” now 😥
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And UC I have no idea what’s going on there, only thought is they’re giving Lyle grief because he doesn’t qualify as a carer (to them) because of the piffly amount of PIP I get (high mobility but for planning a journey not moving around, & zero care). I’m terrified he’s gonna be forced to leave me constantly, there’s nobody who could help care for me…

We are planning to reapply to PIP, add new conditions, & fight to get what I’m entitled to, but we were trying to wait for medical evidence. The reason they gave me so little before, despite my atrocious health, was that “if my health was so bad the NHS would be doing something & you’d have medical evidence”. So what do we do??

The only GP who is willing to diagnose ME we can’t get in touch with, & all my other conditions I’m waiting on endless referrals…ready to give up here I feel so overwhelmed 😭

(Posted 31st July 2019)

Flaring fun! Been stuck in bed w/ PEM…that pain, exhaustion & fatigue. Oof. Feeling so rotten is…depressing. On top of bipolar depression, it’s just…not needed 😂

I think my autism passport is finally done, after 8ish months of trying to get it all sorted? 😂 The guy in charge of doing it is useless, the template is glitchy af & legitimately impossible to work with…but I think it’s finally done! We utilised text boxes, printed before saving it, then scanned the printed copies back onto the PC 😂
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In other good news today Lyle phoned the GP surgery & asked for the contact details for the iMSK clinic. Doing their job for them, basically 😂

GOOD NEWS!

The iMSK sorted out and accepted my referral – we have an appt in LESS THAN 2 WEEKS!! 😱

So that’s really positive, now we have to hope they’ll actually listen…we *need* the MRIs & a referral to a rheumatologist from them; physio would be great, but they need to be aware of hEDS & CCI for that, so it makes me nervous 😅
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The UC thing with Lyle yesterday was indeed because they can’t accept that he’s a carer due to my PIP rate. Despite me needing care with everything, & him being a #fulltimecarer…because PIP purposefully left me ONE POINT off the lowest care rate, he *can’t* be put as a carer to UC.

Idk why this suddenly became an issue after 18mnths, but this means he has to be placed on the intensive work scheme. Him & his WC are figuring out things (eg courses) he can do from home, whilst still being able to care for me.

Yes, this is disgustin. And #ableist. But there’s nothing we can do 🙃

This means we’re having to urgently reapply for PIP to fight for the rates I’m entitled to, as it’s now seriously affecting several other things. Basically it’s all a big mess because the UK is disgusting in its treatment of disabled people & disability benefits 👍 (isn’t everywhere though?)

(1st August 2019)

Today’s been a better day physically so I think I’m crawling out of PEM from my parents’ visiting last weekend.

Mentally though today has SUCKED. Depression is still very heavy, & in addition I’ve been autistic panicking/obsessing about the iMSK appt.

WOW do I struggle having appts that aren’t predictable & where I don’t know what’s going to happen 🙃

Lyle has been great at talking it all through (repeatedly 😂), reassuring me, & coming up with solutions bless him 💙

I spent several hours spread across today writing notes for the appt, which helped a little.

We made it out on a dog walk but it was a very rare trip out where I didn’t enjoy it at all…too struggley!! We did get caught in a storm though, scorching sun one minute torrential rain the next! That was my favourite part, although Bandit hated it despite me wrapping him up in my jumper 😂

(2nd August 2019)

PEM-y af.

Apparently PEM/PENE from this weekend is not done with me yet 😥

My exhaustion is incredible. It’s not been this bad since before we knew about CCI, so that’s fun. I’m sat in Zeke to exercise my neck & it’s torture. Pain isn’t so bad, HRs doing good, #seizures are normal…but the exhaustion is crippling.

I might take a benadryl to force more sleep, as awake I’m just a zombie anyway. It’s gloriously sunny out, so I hope I manage a walkwheel at some point.

Today’s the start of a new week’s budget, so after speaking with the mobility place we’ve bought Zeke’s new batteries!! 🎉 They were £100, so we can’t afford much else haha, but eeeeh flipping exciting! Estimated delivery is THIS MONDAY too 😱

(Posted today)

The letter for the iMSK clinic arrived today! 🎉

And my title was correct, which made me feel ridiculously grateful. The place that is worse for misgendering me & ignoring pronouns is the NHS 😕 The letter said that they have Q&As on the 2nd sheet of paper, which I was excited about as I’m an anxious autie…but obviously we didn’t get a 2nd sheet of paper, so 😂

Not too big of a deal though as Lyle was going to ring them as soon as we got our appt letter anyway, to ask lots of questions about the appt & explain I am autistic.

The letter also said the team could travel to the GP surgery a 10min walk from us, which would’ve been nice if the scaffolding didn’t mean our town centre is inaccessible to me 🙄 So we’re keeping the appt in the city, as we can get in the rain strain a back way & avoid the scaffolding.

Speaking of which, I’ve posted screenshots of the email Lyle sent to the complaints team of the highways dept.

We phoned them when it had been exactly 22 working since we first reported the scaffolding to them, & they hadn’t even done the inspection yet so it’s no closer to being resolved. 22 working days was the ridiculous limit they gave themselves, & they couldn’t manage to put 2 fucking ramps down in that time? Seriously? 🙄
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I’m still feeling chipper mentally. Physically not great, but at least I’m used to that! Going to head out on a little training walk with Bandit, although we don’t have many places to train as – you guessed it! – we can’t get into our bloody town centre 😂